In truth, this post is so very, very late. Though central to our life, I’ve neglected to ‘announce’ anything here. Caught up in the storm of scheduling, facts, theories, investigations and emotions, I’ve never quite found the words.
…and I wanted to find the words, the best words to explain what’s happening in our home. The enormity of what’s to come. The pains we’re feeling, the pure fear we feel in our hearts, the difficulty in taking every breath.
But I can find no words. No appropriate, correct, inspiring, uplifting, sing-song, poetic-like words to tell you what the future holds for what I will be sharing on Special Happens. What I can do, is give you excerpts of what we’ve shared with family and close friends.
It goes something like this:
“J has autism, cerebral palsy, sensory processing disorder and intractable (untreatable) epilepsy. A form of epilepsy called LKS / ESES. His brain is in a spike and wave pattern that, among other damages, does not allow REM sleep…the sleep needed to consolidate the days events…allowing learning to happen. Spike and wave equivocates to his brain firing in attempts of physical manifestations of seizures…. the damage being done is pervasive.”
“…the last EEG… shows that he is at 100% spike and wave activity the instant his eyes close and nearly 100% during his awake hours. In essence, his mind is in a constant state of internal seizure / pre-seizure activity and causing damage…”
“The MRI shows that the ENTIRE left hemisphere of J’s brain is malformed. …It looks to be the true example of “sometimes these things happen. And, quite honestly, a miracle that he’s here…and functioning as well as he is.”
“We’ve had a series of appointments… PET Scan and MRI, NeuroPsych, 2 days of infusions, a LONG appointment meeting the Rehab doc, NeuroPsych again, one of two neurosurgeons and our epileptologist, and the then second neurosurgeon… They have had what they call a “conference” and presented J, his EEGs, all testing etc to 20+ doctors, therapists, social workers and more…”“Since NO medication will have (or will ever) work….the surgery is necessary to stop the left side from it’s constant seizure status. Eventually, the one medication that’s holding them to a subclinical level will wear out … and J will then be in a full blow constant outward (clinical) seizure. That – again – no medication can stop.”
They have definitively concluded that “we have to disconnect the entire left hemisphere from the right… disconnect the two halves. It’s called a Hemispherectomy.”
“…. In the end, the choice we are faced with is to watch him deteriorate slowly, eventually needing this brain surgery or a brain surgery that also involves removing a portion of the right side too… or give him a chance….”
To say my heart is heavy would trivialize the sorrow of my soul.
Gina is the owner / editor, and lead author of Special Happens. She resides in Colorado where she is a wife and mother of 3, and is a member of the Board of Directors for the SPD Foundation. You can read more about her here.